Category: Education & Advocacy

First, I want to thank all of you who expressed concern after my blog post last week. It was a very stressful week which definitely had an effect on how I felt. I saw my Movement Disorders Specialist on Thursday and she assured me that I am doing ok, I just need to get more sleep and reduce my stress levels. She suggested meditation, which I have tried before, but never seemed to get into it. I will try again and hopefully will be more successful.

The California Parkinson’s Disease Registry

Beginning July 1, 2018, a new California Parkinson’s Disease Registry (CPDR) will be implemented. The California Health and Safety Code (HSC) 103860-103870 requires healthcare providers diagnosing or providing treatment to Parkinson’s disease patients to report each case of Parkinson’s disease to California Department of Public Health. It will be a statewide population-based registry that will be used to measure the incidence and prevalence of Parkinson’s disease.

From the CPDR website: “Surprisingly, little is known about how Parkinson’s disease is distributed among different population groups and whether the patterns of disease are changing over time. California’s large and diverse population makes it ideal for providing important information about this disease. CPDR will expand our understanding of Parkinson’s disease to ultimately improve the lives of those affected.”

Why do we need Parkinson’s Registries?

When a large population of people have a disease like Parkinson’s disease (PD), it’s essential to have accurate numbers of how many people have the disease, where they live and why they have it. According to the Parkinson’s Foundation, this information helps researchers, healthcare professionals and even legislators determine how many resources should be allocated to addressing and treating a disease Currently, the National Institute of Health (NIH) has no firm numbers for the incidence of PD in the United States, which has been estimated to be about 500,000- 600,000. The last major PD prevalence study was completed 40 years ago in 1978. Because the risk for PD rises with age, the number of people with Parkinson’s is expected to increase dramatically as the Baby Boomer population ages, The Parkinson’s Foundation Prevalence Project estimates that 930,000 people in the United States will be living with PD by the year 2020. This number is predicted to rise to 1.2 million by 2030.

What the Registry does NOT do:

Disclose individual patient information

Report you to the DMV

Jeopardize your current or future medical care

A quick search on the internet showed that only a few other states currently have Parkinson’s Disease Registries, including Nebraska, Utah and Washington. More states need to create PD Registries soon, so that they can plan for the increase in services and resources needed for treating PD as the population ages. If your state does not have a registry, contact the Michael J Fox Foundation or the Parkinson’s Foundation to find out about lobbying your state legislators to create one.

There are a growing number of best Parkinson’s Diseases blog lists popping up on the internet. The latest one is from Everyday Health, an online Health magazine. The list consists of 10 blogs that they call “truthful and inspiring.” I am proud to be one of the ten and congratulate the other bloggers chosen. There are many very good blogs out there, so if your favorite is not on this list, it may be on another.

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Letter from Mark Twain to a snake oil peddler: “You, sir, are the scion of an ancestral procession of idiots stretching back to the Missing Link”

1905

Did you know that the latest snake oil salesman is lurking in your computer? Yes, they are baaaaaack. Buyer beware.

About every 2 months, I get a comment on my blog from someone claiming their mother/sister/brother with Parkinson’s was cured by a “miracle product” that was made especially for Parkinson’s. In fact, 3 have been identical except for the name of the person making the comment. An herbal company in South Africa or Europe or somewhere else is offering this miracle drug. Of course it is not a miracle drug and they will charge you an exhorbitant price for it, which you will be happy to pay if you believe their hype. If you go to the company’s website, you will see that the same “cure” is offered for any number of conditions, not just PD. Others post “cures” or products in Parkinson’s Facebook groups that are dubious at best. But they get wide distribution this way and can reach out to Parkies who are desperate to make their situation improve, without real “drugs” of course, because by taking those drugs they are admitting that they are “sick”.

So how do you know what is real and what is snake oil?

First, ask your Movement Disorders Specialist or Neurologist if they have heard of this product. If they don’t know about it, ask your pharmacist. They can look at the ingredients and give you a better idea about whether the product is legitimate or not.

Often these “cures” are just a combination of supplements that you may already be taking, but because they are packaged together as a “cure” the company will charge 3-4 times what you would pay at the local drugstore when buying the individual products. Then there is the issue of the quality of the ingredients. With any supplement that you take, you need to be aware that the actual amount of the calcium, B12, Co-Q10, etc. can very widely from brand to brand. Again, check with your doctor or pharmacist about the quality of the supplements. They can hopefully steer you towards the more reliable brands.

And then there is also the question of toxicity and interactions with the Parkinson’s drugs that you are already taking. Before taking any supplement, read warning labels about interactions and if there is any question, check with your doctor or pharmacist to make sure that it is safe to take with your PD drugs. The last thing you want to do is end up in the hospital from a bad reaction.

The bottom line is this. Don’t fall for anything that promises you a cure. There are NO known cures for Parkinson’s at this time. Be critical about what you read. Ask questions and most of all, be aware that someone is trying to make some money off of your misfortune. The snake oil salesmen have been around for thousands of years and unfortunately, are not going away any time soon.

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It’s April, which means you are going to be hearing a lot about Parkinson’s Awareness Month. If you read any other blogs or PD newsletters, you have already been inundated with information. There is a lot happening this month, with many events being planned around the April 11 birthday of James Parkinson. His groundbreaking paper, “The Shaking Palsy”, was published in 1817 and has long been considered the foundational text of the disease.

So the good news is that we Parkies are all getting the info about Parkinson’s. The bad news is that the outside non-Parkie world is still clueless. So here we are, 201 years after Parkinson’s essay and most of the world and many Parkies believe that there is nothing that can be done to improve our outcome. And many still think of an old man bent over, shuffling and trembling when they hear the words Parkinson’s Disease. So it is our job to change that perception. We may not yet have a cure, but scientists and researchers seem to be getting close. There are many new theories about what causes Parkinson’s that are very promising, and one of them might just lead to a treatment that could be a cure. As people with Parkinson’s, we must demand the best treatments available to improve the quality of our lives. And to do that, we must be educated consumers.

Here are a few things that you can do this month to learn more about Parkinson’s and to raise Parkinson’s awareness. I tried to include a few new things that you may not already have read about.

I #uniteforParkinsons because I want to play with my grandchildren

Join the #UniteforParkinsons campaign. This campaign was originated in England with Parkinson’s UK and the European Parkinson’s Disease Association (EPDA), but is now a global campaign. Post a photo or video of you on social media with a sign with the words I #UniteforParkinson’s because ……. (you fill in the blanks) Please post them on the Twitchy Woman Facebook page as well as your own FB page, Twitter, or whatever social media you are using these days. Let’s see how many we can get this month on Twitchy Woman! There is also a guide for the campaign which has many ideas that you can use. Share your story and inspire others.

Participate in a local walk. The Parkinson’s Unity Walk takes place in NY on April 28. There are many other walks, runs and other activities going on around the country. Check with your local organizations to see what is happening in your area.

This one I just heard about and it sounds fascinating. Log onto INSIGHT 2018, Wednesday 11th to Friday 13th April for World Parkinson’s Day. Join the first online World Summit and discover how to live your best life possible – because of and in spite of Parkinson’s. Connect with experts, academics, specialists, clinicians and people living with Parkinson’s who are trying to live their best life possible.

Become a Patient Advocate for any of the Parkinson’s organizations. They will train you to reach out to elected officials, speak at public engagements and more. Another interesting concept is the formation of Patient Advisory Boards for pharmaceuticals and other companies. They want to hear from us about what we want to treat our Parkinson’s and see us as part of the team from start to finish in developing new drugs, clinical trials, etc.

In Los Angeles, where I live, the Parkinson’s Community LA is having an event titled “Living Artistically with Parkinson’s” featuring works by people with PD. All pieces will be for sale by silent auction and will benefit the artists and PCLA.

About 18 months ago I wrote a blog titled Breast Cancer vs. Parkinson’s in which I lamented about the fact the Parkinson’s Awareness Month was nothing compared to Breast Cancer Awareness Month. Let’s try to change that perception together, today!

Your success and happiness lies in you. Resolve to keep happy, and your joy and you shall form an invincible host against difficulties. Helen Keller

It’s that time of year again, when we look back to see what we have accomplished, and look forward to the challenges and opportunities of the year ahead.

First, I want to thank all of you, the readers of this blog, for following me this past year. It has been an adventure for me. I hope that we will continue this dialogue for many years to come.

It has been 9 years since my double diagnosis of Parkinson’s and Breast Cancer. Hard to believe that it has been that long. I am doing quite well, with my symptoms mostly relieved by medication and exercise. Of course there are ups and downs, especially while living with Parkinson’s. But for the most part, nothing holds me back. Mr. Twitchy and I have been traveling extensively, and plan to continue going places near and far, as long as we can.

Some of the highlights of our past year:

The best part: The continued growth of this blog has been a blessing beyound description. The ability to connect with so many, to share information — and inspiration — with each other, to confirm that we are not alone and that we are, in fact a community, has brought joy and meaning that is difficult to put into words. Let’s continue to read and comment and inform each other; and it would be a thrill to meet any (and maybe many) of you at the Kyoto World Parkinson’s Congress in 2019.

The most curious part: The post with the most views in 2017 was actually from 2016; “Breast Cancer vs Parkinsons” discussed how the diagnoses are seen so differently, with the former being “acceptable” and the latter something to keep hidden. The dichotomy seemed to resonate with a lot of people. Sex and the PD Woman came in a pretty distant sixth place. Not sure what that means. (Maybe an update with pictures in 2018?)

The most humbling part: Being named one of Stanford Medicine’s Favorite Parkinson’s Blogs, one of Feedspot’s 50 top Parkinson’s bloggers (there are a lot of great bloggers on both lists, including many of the bloggers that I have been following since long before I began writing this blog) and being chosen as an official blogger for the 2019 World Parkinson Congress.

The most exciting part: Working with the Parkinson’s Foundation to create the study Women & PD TALK, which grew out of the Women & Parkinson’s Initiative two years ago. Led by the Parkinson’s Foundation and funded through the Patient-Centered Outcomes Research Institute (PCORI), Women and PD TALK is the country’s first national effort to address long-standing gender disparities in Parkinson’s research and care based on the recognition that the disease affects the sexes in different ways. Its goal is to develop new patient-centered recommendations to improve the health of women living with Parkinson’s. It has been a pleasure to work with Allison Willis, M.D., University of Pennsylvania and Megan Feeney, MPH, Parkinson’s Foundation, two true luminaries in the Parkinsons world. We have been privileged to work with teams of Patient Leaders and Health Care professionals who are planning forums in 10 different locations. The first forum was in San Francisco in December and offered an exciting start that exceeded our expectations.

Some exciting prospects for 2018:

The Women & PD Talk Forum in Los Angeles, on January 27, which I am honored to co-chair with Adrienne Keener, M.D. and Ali Elder, PT. This will be the 3rd of the 10 forums being held around the US.

The anticipated report and recommendations from Women & PD TALK for improving care and outcome for Women with PD.

Working with the World Parkinson Coalition to get ready for Kyoto in 2019

Watching for, and sharing with you, the latest news on PD . We seem to be inching closer to finding the root causes of Parkinson’s and possible treatments to reverse the damage. Will this be the year for the big breakthrough?

Oh, and we are expecting our 4th grandchild in May. So there’s that, too.

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One day at work you notice something is wrong. You are moving more slowly, or perhaps your hand shakes at times. Eventually, as the strange symptoms progress, you see a doctor. You hear the dreaded words “You have Parkinson’s Disease”. Now what do you do? You are afraid to tell your boss, for fear of losing your job. You don’t want to confide in your co-workers, even though they have begun to suspect something is amiss.So you quietly try to get the job done, even though some days it becomes extremely difficult to complete your tasks. It is clear that you are going to need some kind of accomodations at work, but you don’t know how to ask without “outing” yourself.

I asked my husband, the retired labor attorney, for some advice on this topic, since several of my Parkie friends were concerned about what to say at work. He referred me to Robin Dal Soglio, who had been an employment law partner at his law firm and now was a partner in her own firm. She met with a group of us last week to talk about Parkinson’s in the workplace.

As employees, we don’t always know what our rights are if we have disabilities. Many people are under the assumption that if they say something, they will lose their job. Not true, according to Dal Soglio. The most important things you need to know are:

You ARE NOT required to disclose your “disability” to anyone at work.THE ONLY TIME THEY NEED TO KNOW IS IF IT MIGHT AFFECT YOUR ABILITY TO PERFORM THE JOB.

There are two sets of federal laws (and many states, like California, have similar laws) that most like apply to your employment situation:

Americans with Disabilities Act (ADA)

Family and Medical Leave Act (FMLA)

There is a difference between the “disability” you have and whether that disability raises job-related limitations. Information about your disability includes: its definition, how you acquired it, how it affects your life, its prognosis, any medical treatments, etc. Employers generally have neither the need nor the right to know these things.

If your disability does raise job-related limitations, the ADA requires your employer to provide you with reasonable accommodations on the job to help you to be able to do essential functions of the job. The employer is required to discuss these issues with you; what is “reasonable” and what is an “essential function” have to be determined on a case-by-case basis.

The FMLA act gives you 12 weeks off per year, which can be taken in increments as small as 1 hour (so you can go to that much needed PT session or exercise class) to the extent necesary to take care of disability. This might involve time off work for extended periods of time, time off to attend medical apointments, switching to part-time work for periods of time and possibly other accommodations depending on the specific factors involved.

Sometimes we need to look at things through a different lens, our employer’s. It has a mission to accomplish and we must be able to contribute to that mission. As People with Parkinson’s, we cannot look only at our needs and disabilities. Those of us who are still working must also be mindful of how management has to accommodate our “disabilities” and how possible accommodations affect our contributions to the workplace. This is why the law requires good faith communications between the employer and employee about possible reasonable accommodations and what the essential functions of the job are. Good faith discussions that enable you to continue working with reasonable accommodations for your disability can and frequently do benefit both you and your employer.

Dal Soglio gave us a list of workplace accommodations posted by the Job Accommodation Network (JAN). This website can be very helpful for navigating the labyrinth of laws protecting you in the workplace.

The Michael J Fox Foundation also published two guides on Parkinson’s at work. You can download them here.

The bottom line is that you have control over when, how and even whether you disclose your Parkinson’s at work. If you are not sure what to do, check out the resources above or speak to an attorney who specializes in employment law. Armed with the right information, you can work with your employer to determine how you can continue to work in your present position, even with Parkinson’s.

Many thanks to Joel Krischer and Robin Dal Soglio for providing this information.

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Disclaimer

Dear Readers: I love to see your comments and get your emails as we share our collective experiences. I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctors.